I am on a plane heading back to Stanford for my 3 month PET scan. It’s hard to believe how quickly time has passed…time flies when you’re having fun and that couldn’t be more true, because this last month has been a lot of fun.
Trinity had her holiday dance showcase and performed at a Christmas tree lighting which was so cool to watch. She does hip hop and I am amazed at the moves these girls can do. Even her teacher Mrs. Wilson came See it which was really special!
We also made a surprise trip to Idaho for our dear friend Kathy Andary’s 50th surprise birthday party. No one except Shari was expecting us, and it was so fun to see the look on our friends’ faces when we showed up.
The holiday season is usually a time of stress and busyness, and because I was so tired from chemo last year I felt like I missed out on a lot of the fun things we normally do. I was so happy to be able to have the energy to do these things and even little things, like bake cookies for the kids and help Addison with crazy hair day!
But much of the last few weeks have been spent adjusting to my new normal of trying to take care of myself and taking care of my family. Fitting in time for the long list of things I am trying to do for me on top of my normal list of to dos has been a “learning process”. I have always been a great multitasker, and am actually trying to be less so.
My friend Pamela put me in touch with a good friend of hers who coaches people with illnesses. She asked me why I think I got sick and my answer was something like, “Well I don’t think it was my diet because I ate pretty well, and it wasn’t lack of exercise, so it may have been lack of rest because I am terrible at that.” My “go, go, go” personality hasn’t necessarily served me well and I am learning how to rest for what seems like the first time in my life.
But the good news is that I have felt well and my energy is coming back. Oh, and my hair is growing back too. It finally looks like an intentional style. Brandon says it’s very “Annie Lennox”!
For once I am going into this PET scan fully expecting some good news. I am happy to feel like I have a say in this cancer story, rather than being at the mercy of the medications.
Thank you so much to my cousin Janet for sending some very cool non-toxic cleaners, Michele for making dinners for my family, Shari for making soup and juicing for me in Idaho, Tina and James who always graciously give us a place to stay in Palo Alto, and to my incredible in-laws Mama B and Papa B who have come to Tucson this week and have already done a long list of things for us!!
And of course, thank you to everyone praying for me and my family. I am hopeful that tomorrow may finally be a turning point in this journey.
Onward and Upward!!
Hi there, my name is Kay Blackburn. I was 44 years old and extremely active when I was diagnosed with Non-Hodgkins Lymphoma in October of 2016. My life’s passion had been about health and wellness and my daily routine included the gym and trying new ways to get our three daughters to incorporate healthy foods into their diet. I spent so much of my energy on being healthy, that you could probably imagine my shock when I learned that I had a large mass in my abdomen as well as others in my chest, and under my right arm on Halloween 2016. My normal life hasn’t been the same since.
I started chemotherapy/immunotherapy treatment within 2 weeks at a local oncology office. My particular lymphoma was slow growing (follicular) and I was told if you were to have cancer, this was the one to have because is very treatable. I considered myself relatively young and in good shape, so I was ready to fight the good fight.
My treatment plan was 6 months of Rituximab/Bendamustine, given over 2 days every 4 weeks for 6 cycles. I started in November and went through 5 cycles. After the 3rd round, my doctor ordered a CT Scan with contrast which showed that the tumor under my arm was essentially gone and the ones in my chest were much smaller, but the large mass was only shrunk by about 25% and there was another that showed very little change. At that point, we continued another 2 cycles, and at my appointments I kept questioning what we were expecting.
At my meeting with my oncologist the day of my 5th round, my persistent questioning finally convinced him to order a PET scan the week before my 6th and “final” round of treatment in order to make sure we were tracking along the right path. I was crushed when the results came back that in my abdomen the tumors were unchanged in size or slightly larger and more hypermetabolic (active/aggressive) than they were in the original PET scan I had in November.
It was so discouraging that my doctor seemed almost panicked and had a “deer in the headlights” look. It is a frightening thing to be in front of an expert, who is caught off guard and not sure what to say.
A biopsy that next week confirmed not only a transformation to Diffuse Large B Cell, but a rare gene mutation as well involving the rearrangements of two genes, MYC and BCL-2, which they call Double Hit Lymphoma. This sub-type is even more aggressive and the prognosis was very poor. In layman’s terms it’s like the accelerator is floored and the brakes are broken on the cancer cells. At the time it was fairly new in terms of diagnoses and research (within the last few years) and therefore hard to find a lot of people out there who had had it, much less survived from it.
On Good Friday of 2017, I found out that I have Double Hit Lymphoma and my cancer journey got a whole lot longer while my faith in God got a whole lot stronger. This blog is my journey from being afraid and uncertain, to learning what to do to heal, finding the right support and resources, and being empowered. I pray that my story will give you hope if you’re in a similar situation. After 4 years of staying steadfast in my faith, being diligent about self-care, and taking massive action, my body has healed and I am in remission.